If there is one thing Lesa Brackbill is going to take away from this experience, it’s to never underestimate the kindness of people, she said.

“One of the most amazing things is the kindness people have shown our family during the worst thing that’s ever happened to us,” she said.

Brackbill and her husband of five years, Brennan, wanted a child for several years before she finally became pregnant at the end of 2013. On July 30, 2014, she gave birth to Victoria, whom they presumed was a healthy baby girl.

Victoria, nicknamed Tori, was a happy child, Brackbill said. She was rarely fussy and was meeting all of her education milestones, she said.

That all changed at the end of January.

“She became extremely irritable and would not stop crying, which was rare for her,” Brackbill said. “She was throwing up pretty much every single feed. There wasn’t any smiling, talking, moving; it was a complete transformation. She has never regained that.”

After several doctors visits, CT scans and MRIs, Tori was diagnosed with Krabbe Disease, a rare genetic condition that affects the brain and nervous system, according to the Mayo Clinic.

Krabbe Disease usually begins to show in infants around 6 months old, according to the Mayo Clinic. By age 2, the disease is usually fatal. That’s the prognosis for Tori, who is now 15 months old, her mom said.

“No one should have to go through this,” Brackbill said. “But we’re just trying to focus on creating memories and experiences with the time we do have left.”

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Tori Brackbill, 15 months old, sits at a chair in her home. In January, Tori was diagnosed with Krabbe Disease, a genetic condition that impairs her ability to walk, talk, eat and more.(Photo: Submitted)

To do that, the Brackbills created a bucket list for Tori. On July 30 they caught fireflies. On Sept. 11 they went to a Phillies game. Next up is visit a local fire station to check out a firetruck, Brackbill said.

“It’s easiest if we stay home, but it won’t provide as filling of a life for anyone,” Brackbill said.

It’s not just about giving Tori experiences, Brackbill said. Now, it’s time to step up and become advocates of awareness. Their website, thebrackbills.com, was created to chronicle Tori’s story and bring awareness to the challenges of the disease. The site gives updates on the latest happenings in the Krabbe Disease community.

As of Nov. 10, the website had 2,450 followers and more than 680,000 page views. The Brackbills also share their information on the "Tori's Triumph - Team Tori" Facebook page, which has over 10,000 likes.

Of course, there are costs for all the doctor appointments, specialists, surgeries and special equipment needed to care for Tori. She had a feeding tube put into her stomach and had a procedure done to stop throwing up, Brackbill said. While insurance covers a lot of these costs, the out-of-pocket expenses can get a little overwhelming, she said.

Meagan Warehime, a Hanover resident, heard of Tori’s story through working with her grandma, she said. She was determined to help the Lower Paxton Township family, she said.

Warehime has put together a benefit bingo at Hickory Falls Family Entertainment Center, she said. The bingo will start at 7 p.m. on Nov. 13, and tickets will cost $15.

Prizes, like tickets to Hersheypark, will be given away all night. All the proceeds will benefit the Brackbill family.

Warehime has already raised enough to cover the cost of expenses for the event, she said. Now, the rest of the money raised will go to the family. The goal is to raise around $3,000, she said.

“I had the privilege of attending her first birthday party. The second I got to hold her, I knew I wanted to do something to help,” Warehime said. “They’re the type of family that deserves the help; they would give a stranger the shirt off their back.”

Bingo: If you go

Hannah's Law

What: Mandatory newborn screening for Krabbe and other degenerative diseases. Some research has shown that stem cell transplants can help infants who are treated before they experience symptoms, according to the Mayo Clinic. The Brackbills are advocates of implementing this legislation.

When: Hannah's Law was passed in October 2014 but has yet to be implemented, even though implementation was expected to start 60 days after passing. Karen Murphy, the Pennsylvania secretary of health, wrote to the Brackbill's that the budget impasse is now playing a role in implementation.